By Ryan on September 8th, 2016
At BE, we consider ourselves fortunate to have a very diverse group of clients. And this week I want to shine the spotlight on one gentleman in particular. Recently, I had an opportunity to interview Joe Akmakjian of the Muscular Dystrophy Association. Earlier this year, Joe was named the National Goodwill Ambassador. What’s interesting is that this is the first year the MDA has chosen an adult for the position.
Search for his name on Google and you’ll find a handful of articles and photos – even a skydiving pic! It quickly becomes clear that he has a story to tell.
Here’s what I learned:
[Joe] My job is to represent the individuals and families that the Muscular Dystrophy Association (MDA) serves on a national level. More specifically, I travel around the country to different events, conferences, fundraisers or media appearances to share my story and educate others on the realities of living with a muscle-debilitating disease. Often I meet with current and new sponsors to thank them for partnering with MDA and working hard to help the community of people we aim to help, which I am a part of. I speak on behalf of the organization to give an understanding of what services MDA provides people, and why it’s important they are able to do so. As the first adult NGA, part of my role is teaching people about the importance of helping adults living with muscle-debilitating disease live independent and fulfilling lives. I also meet with those who benefit from MDA services to get a better understanding of what they need from the organization and how we can better serve them.
When I was diagnosed with spinal muscular atrophy in Nov. of 1992, I was given a life expectancy of 12 years. Now, because of the advancements in medicine and medical technology, I’ve far surpassed that. There’s no telling how long I’ll live. In recent years we’ve seen more drugs and treatments brought before the FDA than ever before. Right now, researchers working on studies funded in part by MDA predict that the next five years will bring more development of drugs and treatments than the last 50 combined. How cool is that?
At first I was terrified to attend MDA Summer Camp. I was nine the first time I went. It was unnerving to anticipate a week being cared for by strangers. My mom was my only caregiver until then. That was all I knew. But camp taught me a lot of great life skills. For instance, it taught me that I could survive with the help of others and didn’t have to only rely on my mom for care. That’s what really helped to spark my dream of one day living on my own and having an independent life. Summer camp is where a lot of kids with muscle-debilitating disease learn to be independent and live beyond societal limitations.
There are a lot of ways for people and companies to get involved with MDA! Individuals can donate to firefighters out collecting for Fill The Boot or buy a Shamrock at participating retailers. They can also participate in a special event for MDA like Muscle Walks, Team Momentum, Lock-Ups, Muscle Team Galas. They can also create a “Your Way for MDA’’ website and do their own fundraiser. Companies looking to partner with MDA can also join our special events or participate in pin-up programs, like MDA Shamrocks. People and business looking to help out can also call their local MDA office and see if they have any volunteer opportunities open. For more information about getting involved or to find a nearby MDA office, visit www.mda.org.
At MDA we want to show the world that individuals and families living with muscle-debilitating disease are thriving. So often people with disabilities are told they can’t live lives of freedom and independence, but they are. Live Unlimited means something different for everyone. But the main concept is that we all are living past our perceived limitations in many ways, for us, the sky’s the limit.
I’d like to thank Joe for taking the time to answer my questions!
Please visit the Muscular Dystrophy Association here to find out how you can get involved.
By Ryan Wagner